I titled this blog the 3 Amigos because often Vulvar Vestibilitis, Pelvic Floor Dysfunction and Interstitial Cystitis occur together. The researchers arent really sure why. All three of these conditions get very little exposure- many physicians dont know much about them either. I have created this blog after being inspired by a fellow blogger- It is time I told my story.

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Thursday, April 29, 2010

My PT always seems to know just the right words to say... she is calm and very supportive. She 'gets' that I am not the average '3 amigo' patient. My body and muscles react much differently than the average patient... just a simple stretch will tighten my PF muscles. I can be flared from PT for a week after... walking, sitting, standing, driving makes my muscles super tight.

An example- I am still recovering from the exam the Uro did in the first week of the month at the appt(that I chose not post about her on the blog)

What my PT understands I just wish my treating NP could understand. I was told I was non compliant at the appt I chose not to post about..so I requested to have my file sent to me and read it...in it Np states patient refused exam , patient refused TP injections (when what in reality was happenign was my PT was advising me not to get the internal exam because it was setting me back way to far in treatment with her..like WEEKS...and the TP injections set me back two MONTHS over the summer... I thought I would never ever recover it was THAT bad...so to see in writing that it is how my NP viewed it was upsetting. and they just dont write refused...they underline it three times and write it in bold...like it is some sort of offense to them.

It isnt my fault my body reacts this way... I try, but if I was going to get vulva injections every two weeks and it was flaring me each visit when she did the internal exam... why couldnt she understand this... at one point the week of the injections I was having three internal exams that week. Two PT visits and one with the NP. and why not fully document what I was telling her ... the reason why I didnt want the exam. again shows how she does not get my '3 amigo presentation' Also, If she had made it clear that internal exams are mandatory then I could have decided not to get the injections as often.
Nothing like thinking all is OK when it is not.

At the appt I chose not to write about a lot happenend...I was accused of things that I saw today were never on my chart!!! Yelled at etc..for things that never were written.

After seeing my file-(which by the way is missing a lot , not sure who they had copy it but it is far from complete) it is clear that the team I put my trust in, really never did understand my condition. and sadly I dont think they ever will.

So, I am thankful that my PT gets it...like really gets it and I know she must get frustrated that simple things flare me... but we have tried to work around it and do the best that we can. She has never given up on me. and never wrote that I refused certain treatments..etc.

I have a ton to think about- can I possibly return to this office...do i even want to? the vulva injections are way past due for me and I do think I need them ..like NOW...but can I go back into that office...knowing what I know now...I dont know that I can.

I think I am sort of being propelled in a new treatment direction by these latest events... I need some time to reflect and a clear mind to reach a decision that makes the most sense to me.

Until then, I am going to recover from PT and pray my muscles return to the tone they were at last week.

Thursday, April 15, 2010

I had an appt with a specialist..and this is just one thing that was said to me.

He was very very nice and listened... but couldnt offer me anything more than what the Dr referring me to him has... he was a bit puzzled as to the reasons why I was sent to see him. This is a bit frustrating because the drive to the office and home caused me a huge PFD flare up...another setback.. and bedbound yet again. PFD flares are only relieved by PT. Frustrating, because I did sort of hope, maybe there was a slim change he would be able to offer something that could help me.

I guess it is good that I went to the appt- now I know...otherwise I would have always wondered..well what if..

this is about the third time a Dr has come right out and said 'I dont know why they sent you here'

Sometimes it is tough not to give up hope.. when it seems even the Dr treating you dont really know all that much..or if they do they arent all in agreement on the cause or the treatment.

I know what has helped me...I know what hasnt. I would hope that to some Dr out there this will mean something.

I have thought about whether to post about my recent appointment- i decided I wasnt going to let that negative energy onto my blog- so I am leaving out the details.

I did think it warranted me mentioning however, as it is affecting my current treatment..and I am stuck in ' a fork in the road'

my consult appt went horribly wrong ..for reasons I am still not sure of- what is clear is I was treated very unprofessionally on all levels.

the exam was the worst I have ever had.. Pelvic exam wise. I was accused of some things.. that I still am not sure why I was accused of them... and my treatment was stopped. Something that was helping- I was told the Dr did not feel they were necessary and I need to adapt to change. No explanations given...especially since they were working.

I have regrouped- I have Dr appt scheduled with different Doctors... but in the meantime I am in a lot more pain. Im frustrated that my PFD is worse due to exam and I am still recovering a week later. The way my PFD reacts is- the muscles will stay tight..and the only thing to get me out of a flare is PT. That being said even with PT last week, my muscles are still not happy from the pelvic exam last week...
I dont know what the future holds..but I refuse to give up or let this experience affect me negatively.

Sunday, April 11, 2010

I was diagnosed with IC, and VVS about 3 years ago... It started after a very very bad bacterial infection... and then the self treatment with monistat... The infection because of my pain levels went undiagnosed.. I was voiding 24 times prior to lunch. By the time I finally got to an office that knew about the 3 Amigos... I was in pretty bad shape.

I couldn tolerate an exam- I mean not even a qtip to be inserted... ( no matter how I tried I just couldnt tolerate it) I tried everything... I tried relaxation techniques... nothing worked. I had a yeast infection for a year straight.

Eventially I quit going to the office- they were frustrated with me and I was frustrated with my body. I decided to try herbal protocols in hopes that I would find relief that way. I found some.. I also treated for Hypothyroid and that helped some as well.

about a year after I left I made my return- this time ready to try anything that I could... the yeast wasnt an issue and I was ready. I still could not tolerate an exam...but could tolerate a qtip.. (progress) Then by luck one of the muscle relaxers prescribed allowed for me to have an internal exam...well my Pelvic Floor was very tight... and I was referred to PT.

My PT literally gave me my life back- I was able to be more mobile, tolerate exams.. all after 4 internal sessions of PT... (a true miracle) My PT actually 'got it " she could feel how tight my muscles were... I was the highest tone possible.

After I went to PT for a few months- It was time to try capsaisin(the wonder cream) I saw improvement very very quickly with it... probably within a weeks time... I used to joke and say I wanted to marry it.. I loved it so much.

PT ended... and although I was more mobile...my muscles were still very tight..like a brick wall. I took a break from PT for a loooong time. In that time I tried Trigger Point injections into the muscles - what I had thought was my bladder and urethra was the muscles...it was the best decision my practitioner and I made...

They would flare me... but I saw improvement...the flare would vary each time... I was determined to not give up though...and I went forward.

The injections werent working any longer I seemed to have hit a plateau...so back to PT I went- and wow this time it was different...my muscles were better... not great but better.

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I am not, nor do I claim to be a medical doctor. Everything in this blog is drawn from my personal experiences and my opinion or the experiences of others. Please consult with your doctor before trying any new treatment including OTC medications, herbal supplements, etc. as they may cause unpleasant or dangerous drug interactions or may simply not be the treatment for you. This blog was my way to make others feel like they arent so alone - I have come a long way and want to offer hope and support.....as I remember how it once was all so new to me.